Putt for PKU

August 11th, 2010 at the Salt Lake Art Center

7:00 PM to 9:00 PM

Click HERE to register online!

Click HERE to download the brochure and registration (mail in)

Join the Intermountain PKU and Allied Disorders Association (IPAD) for a night of fun, friends, and fundraising for a good cause!

At Putt for PKU you and your family can play an artist designed 18 hole miniature golf course and enjoy desserts and drinks while raising awareness and funds for PKU and Allied Disorders.

Prizes will be awarded by age for "most holes in one," "lowest score" and more!

There will also be an auction with lots of great items. Some of the items include: autographed Utah Jazz photographs, $50 Whole Foods gift card, $50 Cambrooke gift certificate, gift baskets, golf items, sports and entertainment tickets, and much, much more!

Registration is $10 each or $40 for a family (2 adults and up to 6 kids).

Children age 2 and under are free!

Map:

If you're unable to attend Putt for PKU, please consider making a tax-deductible donation to IPAD. You can do so by clicking on the "Register Now!" button

We are also looking for Event Sponsors ($750) and Hole Sponsors ($100). If you or your company would like to help sponsor this event, please contact Amy Oliver or Jon Baker. You can also donate items to be included in the auction.

PHOTOS: We have posted some pictures from the Buca de Beppo event. Please visit the Past Events page under News and Events to view them. If you have any photos to share, please email them to us at ipad@go-ipad.org so we can get them added.

ADVOCACY UPDATE

WASHINGTON, D.C. – Senator John Kerry (D-Mass.), a senior member of the Finance Committee, today introduced legislation to provide health insurance coverage for children and adults with rare metabolic disorders including PKU.

The Medical Foods Equity Act of 2009 (S.2766) will require medically necessary food and supplements to be covered by both federal health programs and private insurance plans. Each year, an estimated 2,550 children in the United States are born with rare metabolic disorders caused by a defect in a single gene. Effective treatment of these disorders requires special foods and supplements that lack the nutrients these children’s bodies reject.

“These special foods and supplements are the medicine these kids need to lead healthy lives, and insurance companies need to respect that,” said Kerry. “These kids shouldn’t suffer because the financial burden is too great for their families. This legislation provides an affordable means for getting these children what they need to be well.”

The Medical Foods Equity Act:
- provides coverage for medically necessary foods and supplements in federal health programs (Medicare, Medicaid, CHIP, and TRICARE) and the private health insurance market (fully insured group health plans, self-insured group health plans, and non-group health plans);
- requires the Secretary of Health and Human Services to make a determination of minimum coverage levels for medically necessary foods and supplements for certain rare metabolic conditions; and
- defines “medically necessary food” under the Food and Drug Administration’s classification as food “which is intended for the specific dietary management of a disease or condition for which distinctive nutritional requirements, based on recognized scientific principles, are established by medical evaluation.”

The Medical Foods Equity Act is endorsed by more than forty health organizations including American College of Medical Genetics, the Children’s Rare Disease Network, and Genetic Alliance.